for the
love of their
children
She used to run herself ragged. Three Halloween parties. Three different schools. Filomena Nelson ran between Woodland Elementary, the old Lakota Early Childhood Center and the Cincinnati Children’s Hospital’s Aaron W. Perlman Center on the Halloween 1998 to serve as a party mother for all three of her children’s schools. By the time trick-or-treating came around, she was done. Filomena did not want to see another kid in a costume. She and her husband David Nelson struggle with giving their children, Stephanie, John and Gregory, equal attention. But the couple will never be able to make it even. Filomena remembers taking her son, East junior Gregory Nelson, to the pediatrician after he was diagnosed with cerebral palsy (CP). The doctor told her that no matter how hard she tried, she would never be able to spend the same amount of time with her other kids, John and Stephanie. When twin brothers John and Gregory were born, both were very sick and stayed in the hospital for over a month. After they finally went home, photos by sierra whitlock David and Filomena began to notice delays in Gregory’s development. Although they realized that something was wrong with Gregory after only two months, he was not officially diagnosed until he was five months old. When David and Filomena officially learned that Gregory had CP, they were overwhelmed; Gregory was a twin and their daughter Stephanie was only two years old at the time. “We had no family in town, so there was nobody to help,” says Filomena. Despite the fact that Filomena had training in rehabilitation and special education, she says that nothing could prepare her for having to deal with CP as a parent. East parents Barb and Tim Lozier have faced a similar struggle. Just days after Barb gave birth to twin sisters Niki and Shelley, Shelley began having seizures. While they entered a ZERO TO THREE program, which allowed for Shelley to receive therapy and her parents to join a support group, the Loziers did not have the CP diagnosis down in writing until Shelley was three years old. Shelley is still able to walk and move functionally, yet Gregory has no control over his arms and cannot walk or sit. He also cannot speak, so he must use assistive technology to communicate verbally. The assistive technology has been “a whole other world” for Filomena
by sOPHIA lI
Gregory Nelson displays his sports memorabilia.
that she would otherwise know nothing about if not for her son’s needs. Currently, Gregory uses his speaking computer with a HeadMouse, a device he clicks with his left cheek. “It’s really only been in the last two years that he’s gotten better at communication, although he’s been trying for the last 10,” says Filomena. “Different devices and ways of accessing is a big issue for him. Without using your hand, accessing equipment [is difficult].” To grow accustomed to CP, Gregory attended preschool at Cincinnati Children’s Hospital’s Perlman Center. In addition to following a typical preschool curriculum, the students do physical, occupational and speech therapy. Now, Gregory goes to the Perlman Center in the summers to utilize its assistive technology. The Perlman Center also helps families connect with the appropriate resources. Perlman Center social worker Jackie Rapose serves as a service coordinator, making sure families get the help they need, educating parents and working with the school once a child is in the public school system. Rapose says that while Medicaid and most private insurances cover therapy-related costs, families will run into problems when they need equipment or communication devices. “It’s an ongoing battle to get [the costs] covered,” says Rapose. “When kids come in, if they need a wheelchair or a walker, our therapists evaluate for that and take them through the process, the funding and the
Nikki and Shelly sit together in front of the piano that Shelly enjoys playing.
37 | Spark | lehsspark.org